• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. E

    Targeting mitochondria with ASHA-091

    Is this the red light thing or something different?
  2. E

    NIH 5 year research centers

    Cornell’s center got extended. Any word on what the other two are? https://news.cornell.edu/stories/2023/04/95m-fund-chronic-fatigue-syndrome-research
  3. E

    Should I stop abilify?

    I’m not sure if it worked for me, but I’ve gained a ton of weight. Maybe it’s worked a little. I’ve been on it for over a year. Should I stop it?
  4. E

    Studies find that microbiome changes may be a signature for ME/CFS

    I‘ve added the gold kiwi pills to my probiotic, prebiotic, and butyrate regimen and my IBS is literally completely gone. No change to my me/cfs though. Curious if anyone’s had a change to their me/cfs….
  5. E

    Studies find that microbiome changes may be a signature for ME/CFS

    I’m taking probiotics, inulin and FOS prebiotics, kiwi pills, and butyrate. Anyone have any other proven Suggestions in regards to gut health?
  6. E

    Studies find that microbiome changes may be a signature for ME/CFS

    I just bought these https://www.sunday.de/en/livaux-capsules.html Hope they’re just as effective
  7. E

    Studies find that microbiome changes may be a signature for ME/CFS

    Did your ME/CFS symptoms improve with this increase of F. Prauznitzii?
  8. E

    Studies find that microbiome changes may be a signature for ME/CFS

    Do you have a link to exactly what you took?
  9. E

    Studies find that microbiome changes may be a signature for ME/CFS

    What bacteria is not killed by oxygen, but produces butyrate?
  10. E

    Studies find that microbiome changes may be a signature for ME/CFS

    I’m trying sodium butyrate. Too soon to tell if there’s a change. Is fecal transplant the only way to get F. prauznitzii? Can’t find any probiotics with it. Only this site you can buy it for laboratory use: https://www.atcc.org/products/27766 Oh here’s the article btw...
  11. E

    Has anyone had their genome sequenced?

    Has anyone had their genome sequenced? Was it worth it? Where did you have it done?
  12. E

    Caregiver in greater nyc area

    Anyone know of a caregiver in the greater nyc area for someone with me/cfs? We offer very competitive pay
  13. E

    Evusheld—Any side effects?

    I know some people’s me/cfs gets worse with the vaccines, so I’m curious if this has happened to anyone with Evusheld?
  14. E

    Evusheld—Any side effects?

    I’m thinking about getting Evusheld because I cannot be vaccinated. Has anyone gotten this? Did it make your me/cfs worse? Did it do anything at all? I’m trying to gather as much information as possible
  15. E

    The Hammer - Vistide and Dr. Peterson

    Hi, Are you still active on this forum? Would you be able to talk more about your experience with Vistide? Thanks.
  16. E

    Could Copaxone Help Us?

    Excited to hear updates on this!
  17. E

    Acetyl l carnitine

    I've been taking it for a while and it's one of the few things that help me. I'm having a lot of issues figuring out the optimal dosage and times to give a day though. Anyone have any advice?
  18. E

    Could Copaxone Help Us?

    I'd be really curious to hear if people experiment with this off label and how it goes
  19. E

    Saline therapy

    Oh wow, that's great to hear. Do you have a port or are just doing normal ivs? How much have you improved?
  20. E

    Saline therapy

    Anyone have real success with IV saline? How often were you doing it? For how long? I'm looking for real advice and stories, thank you!
  21. E

    New moles: prevention?

    Same thing, lots of dysplastic nevi since the disease onset. Anyone actually develop melanoma?